Take NPS home with you

You Are Going to Pay for Our Kids

By Adrienne, on January 24th, 2013

For all of his struggles, and in spite of the amount of suffering that exists in his day-to-day life, Carter is among the very most fortunate of the seriously mentally ill children in the US. His prognosis is vastly improved for exactly one reason: money. My family has made an enormous investment in Carter, enabling me to stay at home so that Carter is with me during all his non-school hours, and paying for his tuition to the tiny private school where he finally feels safe enough to learn.

Those two things are, along with an excellent psychiatrist and a wonderful therapist, the things that stand between Carter and the nightmarish experiences of 2009 and early 2010. The relative stability we have enjoyed since then would not be possible without that money. I don’t know any kids whose illness is of the depth and severity of Carter’s who have stayed out of the hospital as long as he has.

This relative stability (I must always use the qualifier relative.) vastly improves his chances at a happy, productive adulthood, because his brain is now wiring around things like feeling capable at school; going to the grocery store and having pleasant interactions with strangers; and the myriad small successes of daily life, like helping around the house and taking good care of our family dogs. There are a thousand things that a typically-developing child of his age does that he cannot, but in 2009, there were months in a row when he couldn’t go to any store and I ran all the errands in the evenings after Brian came home from work. He couldn’t be around other children without my attentive supervision, lest someone get hurt. Our dogs spent most of their days in our sunroom for their safety. Many days, I didn’t even feel safe to take him in the car by myself and Brian had to take time off of work to ride along to appointments.

Because of my family’s investment, Carter has a chance to become literate. He may be able to hold a job someday. His odds of incarceration, long-term institutionalization, and homelessness are decreased.

Put more simply: Carter will probably be cheaper as an adult because of this investment on the front end of his life. He might not cost much more than the price of a monthly Social Security payment and Medicaid for his outpatient psychiatric care. There are no guarantees, and he may very well cost a mountain of money in the form of a prison cell or a hospital bed or the constant bookings into county jail that define the lives of thousands of people who are mentally ill, but his chance for a good life is improved. Vastly.

You know who doesn’t have all the advantages that Carter enjoys? Virtually every child in the US with serious mental illness.

Let’s start with education, with the caveat that most of the people we worked with when Carter was still in public school were knocking themselves out to provide him with what he needed to be successful. The system, though, threw up roadblocks until it was almost slapstick. High-level special education is expensive, and schools do not want to provide a level of special education that is even one tiny increment higher than what is absolutely necessary. Further, the law does not require schools to help children reach their full potential. Education law is mostly written in mushy language that leaves a great deal up to the people filling in the boxes on the forms, but the keywords are appropriate and adequate, not best or even good.

The result of all this was that Carter’s school provided more services in tiny increments, then waited for Carter to fail before adding more services. Around and around we went, with Carter required to fail. And fail. And fail. We knew what he needed. He could not function in a regular education classroom, but there was no way to leapfrog to an appropriate setting. Laws that were originally intended to keep schools from locking students with disabilities in dismal classrooms where all their talent and potential was ignored (a noble cause, to be sure), like least restrictive environment requirements gave the school the out they needed to resist providing an environment in which he could learn. The results were nearly catastrophic.

Carter screamed all the way to school, every single day, and when we arrived there, a teacher or an aide had to pry him off of me and I walked away while he shrieked for me, which would all be horrible enough, except that the terror was with him constantly. Most days, he cried and screamed during all the hours he was at school, spending good chunks of his day in the nurse’s office. If he was lucky, he would throw up, which was the only thing that inspired anyone at the school to call me. Otherwise, they would let him cry, insisting occasionally (as I heard from the hall one day) that he “Stop it right this minute! There is nothing wrong with you!”, determined to force him to deal with being at school. I would pick him up from school and within an hour, he was down with a migraine. By dinner, he would be finished with the blinding pain and the vomiting in time to start crying about his fear of school the next day. He couldn’t sleep at night because of his anxiety, and when I woke him in the morning he cried nonstop, with occasional breaks to vomit.

I recorded this audio in September, 2009 by hanging my phone from a camera strap to the back of my seat, in front of Carter. I would have edited it down to the high points for you, but I really can’t bear to work with it. You can barely hear me murmuring in the background because the phone was behind me, and the audio gets choppy a few times because Carter kicked the phone. I feel horribly guilty listening to this recording, knowing that I forced Carter to endure this level of suffering for nearly three weeks. Everyone at the school was insisting that I bring him; that he be on time; that he stay until the final bell; that he learn to handle being away from me during the day. Every instinct was screeching no no stop don’t do it but I couldn’t listen to myself.

Truth be told, there’s a secret that many of us whose kids have mental, emotional, and social problems keep: so many people tell us, in ways subtle and blatant, that our kids are just fine if only we would stop making such a fuss, that we believe it a tiny bit. Some part of me thought, in spite of all the evidence to the contrary, that Carter could be forced to be OK, that I was babying him, that he just had to learn to suck it up. This is the emotional equivalent of teaching a child to swim by dropping him into the heart of the ocean, mid-hurricane, but the notion is so prevalent, I couldn’t shut it out. I wasn’t confident enough to protect him.

At the end of the recording, you can hear Carter begin to calm down. That’s because I made a decision, as I drove, that I would take him home, and I never tried to take him back to that school again. I had no plan; we had nothing else in place, and no idea if there even was any other option for us. I just knew he couldn’t do it, so I quit my job, bought a book about homeschooling, and prayed for a solution.

All that fall and winter, I drove Carter to therapy and psychiatry appointments and played learning games with him in hopes that he wouldn’t forget too much of what little he had learned in school. My husband, Brian, missed work often after Carter tried to throw himself out the door while we were going 65 miles an hour in the inside lane of I-40 and I was afraid to drive alone with him. We slept in shifts when Carter was so severely insomniac that he slept only on alternate nights. We kept him out of the hospital by the skin of our teeth by turning door locks around so that we could lock ourselves in a stripped-down “safe” room with him and learning to do restraints. We were bruised, beaten, bitten, and battered. We tried one medicine after another (after another after anotherafteranotherafteranother) and slowly, traumatically, came to terms with the fact that Carter didn’t have just an anxiety disorder, or an unusually bad case of ADHD, or some other well-known childhood emotional malady, but something bigger.

Imagine, if you will, what might have happened had I been unable to quit my job? If I had been a single parent? If there were other issues in our family (addiction, for instance) that made Brian and I unable to care for Carter in such an intensive way? The cost of enabling me to stay home with him is small compared to the costs associated with the hospitalization that he would have required if my job had been essential to our economic survival, but if not for my family, I could not have quit.

The only thing parents of kids with mental illness rely on more than the education system is the health care system. Those of us whose kids are seriously ill can’t keep our kids alive without it, and even if we do manage to see to their survival, their quality of life is abysmal unless they receive appropriate medication and therapies. This is exactly the same for us as it is for parents whose kids have leukemia, congenital heart defects, or diabetes. The difference is, no one tells a parent whose child is in a medical crisis, “Sorry; there are no beds in the state. Take her home and give her Benadryl.”

I wish I was making that up, but I’ve heard that story from dozens of families, most recently last week. Mental illness can be fatal. People with mental illness may die or be permanently injured or maimed by their disease. But somehow, when the presenting complaint is in the brain instead of the liver or heart, we as a culture have decided that it’s OK to turn people away.

Private companies don’t have much incentive to maintain facilities for mentally ill patients. Inpatient psychiatric beds aren’t nearly as profitable as medical and surgical beds, and psychiatric patients usually don’t require the kinds of tests that bring in the big bucks for hospitals. When I was in the hospital for pancreatitis last summer, I had three CAT scans and 2 MRIs over the course of 5 days. A psychiatric patient in the same bed wouldn’t have generated nearly as much money for the hospital.

When hospitals send children away, parents are forced to absorb that deficit of care with their own efforts, doing things that no parent should have to do. I have restrained Carter as many as 3-4 hours per day while he begged me to kill him, to call the police to come kill him, or to take him to a tall building so he could throw himself off. This, in any group of parents whose children have mental illness, is a totally ordinary story. We do what we have to do because there is no one else to do it. No one asks parents of children with cancer to infuse chemotherapy at home. If there were no beds available in the entire state for a child in heart failure and the hospital sent that child home with instructions to administer Benadryl and go to bed, TV crews and outraged senators would be all over the situation in no time at all, yet it happens every day to families facing diseases of the brain and there is barely a ripple in the public consciousness.

Unless, of course, there is a mass shooting, at which point people everywhere start to ask, “Why didn’t someone do something? Why didn’t his mother/father/friends/teachers call for help? How could they just let this happen?”, and those of us deep in the mental health trenches laugh bitterly because you don’t know. You don’t understand. Maybe this or that shooter’s mother/father/friends/teachers begged and pleaded for help. Maybe someone sent them home from the hospital because there were no beds. Family members of people with mental illness ask for help, and our loved ones are placed on waiting lists. We try to prove that our children really are on the brink of killing themselves or someone else, because only under those criteria is anyone ever hospitalized in a psychiatric unit.

You know, if there are beds.

Mental illnesses are not static. They are progressive, and the longer a person with mental illness goes without adequate treatment, the sicker he or she becomes. Every time we are sent home to deal with things in the best way we can, we lose a little more of our children. They slip a little further from themselves, a little further from their potential, a little further from the families who love them. Just like a child with diabetes will get a little bit sicker and suffer a little more organ damage with every day her blood sugar is not adequately managed, a child with mental illness gets sicker without treatment, but no one would expect a diabetic child and her family to go home and wait months to see an endocrinologist. Here in New Mexico, the average wait for a pediatric psychiatrist is 4-6 months, if you live in Albuquerque. Children in rural areas wait much longer. In the US today, there are approximately 7,500 psychiatrists who treat children and adolescents, while the need is for a number closer to 20,000.

Where are the news vans and senators now?

The right is trumpeting again about an “entitlement crisis,” insisting that we must stop wasteful spending on social programs. Here’s the problem with that: just because you cut a program doesn’t mean you’ve erased the problem the program was created to ease. We can cut right down to the bare bones, and we’ll still have to pay someone to drive the dead wagons.

If we don’t pay for treatment for people with mental illness, that doesn’t mean we won’t eventually pay for people with mental illness. The difference is, instead of paying for health care, education, housing, and other programs that meet real needs on the front end, we pay for the disastrous consequences on the back end: police, jails, prisons, and long-term institutionalization. The largest provider of mental health care services in the world is the US correctional system, and many people with serious mental illness only receive treatment for their conditions when they are incarcerated. People who could live successful lives with appropriate supports instead become homeless, end their lives, or use illicit drugs to endure the relentless and unbearable symptoms of their illnesses between stints in jail.

Almost no family has all the resources necessary to meet the needs of a person with serious mental illness so we have to do it together, with social programs. We’re are paying, and we’re paying big, but we’re spending our money on the wrong end. My insurance company resists paying for treatment that Carter needs now, but taxpayers will insist that someone pay for a prison cell if he hurts someone in the throes of a psychotic episode someday. Republicans don’t want to fund the expensive special education programs that kids like Carter require, but we sure as hell want cops to keep homeless people from hanging around the entrances to our favorite restaurants.

Almost all of us invest time and money into toothbrushes and regular dental care because we know that it’s cheaper and nicer than having rotten teeth falling out of our heads. We pay the people at Jiffy Lube to change our oil every 3,000 miles because we know it’s far less expensive than letting the engine seize. We hang smoke detectors in hour homes because we don’t want to be burned to death in the night. We have the good sense to recognize that some prevention in the beginning, even if it’s inconvenient and expensive, is almost always easier and cheaper than dealing with the disaster that will come later if we don’t.

Classrooms are cheaper than cops, trials, and prison cells. A hospital bed for a month at the beginning of a psychiatric crisis makes lots more sense than a jail cell for a year after a full psychotic break. This argument about whether or not to pay is nonsense; we are already paying, but we’re throwing our money down an immoral and inhumane suck hole. If the notions of morality and humanity don’t mean much to you, consider this: the return on our investment could be infinitely better.

51 comments to You Are Going to Pay for Our Kids

you’re so brave, mama. that audio clip made me start crying in the first half-second. his bargaining for an early day, so genuine. there have been times when i have listened to the status quo or tried to ignore my own instincts in favor of mainstream or authoratative advice and i still do, at times, but instinctive parenting is a learned process – i wish it were taught, i wish it was promoted through social programs, that alone would provide some cushion against the outcomes for mentally ill in our country.valeri blossom recently posted..new beginnings + name-your-own-price art sale

Oh, Adrienne, you’ve done it again – another heartbreaking post that sings truth so clearly. I want everyone in the country to read this. It is exactly what it is. Pay less up front or extensively more down the road, and with lives ruined, to boot.

Every month that passes without Carter in a crisis, I tick off and count that as a blessing. It is amazing how in spite of it all, we are the lucky ones because we have resources, family we can turn to, to help. And no, 90% probably don’t. I hope we can create a future where they will look back on theses times as foolish and barbaric, where everyone will, get the treatment they need and deserve, where mental,illness will be treated as illness and not weakness or moral failure.

This post had me riveted! I have a friend whose child is going through this and everything you were saying was spot on. When will they listen and finally understand? Your comment about Education being appropriate or adequate hit home for me as I am struggling with the education system here in the UK. If this was the average child’s lot, there would be hell to pay but since it is our children with a special need it is deemed less important.

Adrienne, I bawled listening to that. I am so thankful that you were able to be there to care for your son. I can only imagine your anguish at having to leave him each day. Sending all the love in the world to you as you continue to battle the system built against us. (((HUGS))) & prayers, little mama.Forgotten recently posted..The restaurant…

Wow. This is all so very true. I read it with my head nodding up and down in agreement. I have a son with bipolar and have had to “wait for a bed” as well. Unacceptable. UN-AC-CEPT-ABLE. Period. VERY few people understand this though unless they’ve been through it with their own child. Can’t wait to read more of your blog. Peace and blessings to you and yours!

I truly loved reading your story. My son is 11 years old and since April of 2012 finally is in the right school for him. After 2 other schools, one private one public, with ‘teams’ of specialist brought in to help, all to no avail, he is finally comfortable and is actually starting to like school.
While his mental illness does not sound as severe as Carter’s it is ever present every day in some form.
I understand so many of the fears, turmoil and angst you expressed. I am fortunate to be able to remain home for my son when he is not in school also. I can not imagine what could happen if this were not the case.
He is on the genius spectrum yet his moods can have you believing in Jekyll & Hyde to the fullest extent. S.M.D.D. That is just ONE of his diagnosis. But I have to say that since we found his school, through the government, he is making steady progress and even starting to get along with peers socially.
Thanks for sharing your story and much success for Carter and peace to you.

Wow, wow, wow. The world needs to read your heart. This post hits the nail on the head over and over with the undeniable truth. THANK YOU. I will be sharing…..
And prayers to your family in your daily facing the challenges of raising a special kiddo.

First, thank you Alex for letting me follow you here. These are things I’ve said for years.

I fought for a diagnosis for my son from age 3 to age 13. Finally diagnosed with bipolar type II, NOS, we then endured 3 hospitalizations in 3 months, along with three rounds of school suspension. After the third time he endangered my youngest child we sent him to visit with his Dad for a few weeks. At the end of those weeks, he decided to stay with his Dad. Dad, of course,believes there is nothing wrong with him.

He took him off all of his meds, removed him from his special education classes, etc.. now I get letters from his school in Texas telling me which classes he is failing now (5last semester, 2 so far this semester.)

We won’t make that same mistake again. My youngest was removed from the school system for homeschooling.We did this after numerous requests to test her have been denied. She’s too smart, they said. She’s on a year long waiting list for testing, she’s gone to her first appointment with the ‘anxiety’ doctor.but we couldn’t sit and watch her cry every day, couldn’t listen to more complaints about bullying,couldn’t sit by and watch my eight year old be labeled as hard to handle and difficult while they kept suspending her for refusing to do her work, arguing with her classmates,etc.

Thank you for confirming that we aren’t alone, but also I’m sorry you’re in the boat with us.I wish the system could be changed, but until that go home and take a beastly thought pattern changes, I don’t know what else can be done.

Yes, yes, a hundred times, yes. My daughter is rapid-cycling bipolar 1, with anxiety and ADD thrown in on top. It took us years to get her medications covered, as they are very expensive and the insurance policies that her father would switch to-from as he changed jobs, would not cover more than a small percentage of the meds cost. She now has Medicaid, which covers her meds, but not her doctor and not her therapy. We often have to skip therapy, because we do not have the money for it.

Every day is a struggle with her. She gets violent toward us, her sister and herself when given any direction that she does not want to follow. She is difficult at best, and downright mean at worst. I have been told that I cannot have her hospitalized unless she is an immediate threat to herself or others (and not a kicking/hitting threat, but a serious coming-at-you-with-a-knife threat), unless I want to pay $600/day for her stay. Not an option, not for a second. We just don’t have it.

Thank you for this article. I often feel very alone in dealing with my child. I love her, but… and I never wanted to be the mom who said “but” after “I love my child”. Many days I feel like I just cannot, anymore, but there isn’t anyone else to do it. I feel like an awful person just typing that out, but I have a feeling you (and your readers) will understand.Heather O. recently posted..This Moment {1/25/13}

I can’t listen to the audio. I mean…I won’t. I don’t think I could deal with it. But it’s a great post. Words like “least restrictive environment” trigger me in ways I don’t completely understand. They seem to mean something positive, but they really mean, “least adaptive environment”, “least supportive environment”, “lease expensive environment.”

I remember listening to a school administrator tell me that we needed to care about “least restrictive environment” and I remember finally getting to the point where I didn’t care anymore and telling her I didn’t give SHIT about least restrictive environment…

“But you HAVE to!”

No, YOU have to, all *I* care about is putting my daughter in the best position to succeed. If that’s in a MORE restrictive environment, then that’s where we’re putting her. God I was mad. I was shaking and my voice was cracking and I SOOOO pride myself on speaking levelly and dispassionately and logically, and I was just SO goddamn mad I couldn’t.Jim W recently posted..The Benefit of the Doubt

This post is so heart-breaking. I know parents with children with special needs can get worn down from being told how strong they must be – but you must be very strong – and it’s a wonderful thing that your son has you & not someone who would care less, even if they could afford more.
There was a time when children were put in special ed classes for the wrong reasons & too many children were in special ed that did not belong there. Now, it seems quite the opposite. And the lack of available care out there for any neurological or mental illness in children is exhaustingly awful. It seems that for any childhood pediatric specialist that deals with the mind & the brain, there’s a 4-6 month waiting list or longer. Part of it is the lack of practioners – and there’s got to be a way to get more people looking for a vocation in medicine to look toward these specialties. There are so many children & parents dying for them.

You are so right, and yet somehow the people who have the power to change these things don’t see it. And that doesn’t even count the cost of losing these bright, talented amazing kids who won’t have a chance to be the kind of adults they can and deserve to be. My little brother has a genius IQ, extraordinary talents with mechanics and electronics, but has suffered addiction, unemployment and crippling depression, dropped out of school and for a time ended up homeless, and close to death, because there was no treatment option for a 12 year old boy with mental illness. There was no place to put him when he was a danger to himself and his siblings. There was no where to get treatment when he was suicidal. It is wrong. Children become adults. If they can get the help they need in a timely manner, they can make it, and be productive and successful human beings. Without that help, they can destroy themselves and the people who love them. Why is it so hard to understand?Kermommy recently posted..Don’t ask why…

I think it’s because mental illness gets at identity in a way purely physical diseases don’t, you know? Plus, this nonsense of calling mental health care “behavioral health,” as if the problem is just in the way people act. It’s ridiculous, but people are terrified of mental illness and people with mental illness that they create policies and programs that make no sense at all.

I was shaking my head yes, yes as I read your post. I have seen it from both sides. Working (36 hours on the weekend) as a direct care worker in an assisted living home. It was called that because the family’s of the residents had the money to pay for their care. If not for that money, the residents would have been in the psych
ward at the the state hosipital ( if they were “lucky”). During the week I was homeschooling my daughter and fighting to keep the services that kept getting cut. I worked until I burned myself out. Now we are back to one income and services cut. Making it the best we can.It does help that my daughter has improved were we can “manage” her disorder. If not who knows? We still just take one day at a time,what else can we do? Thanks for writing and sharing. ~ JamieJamie recently posted..How To Encourage Your Child To Talk

Yes. This. I hope everyone reads this, understands that it is point break for our kids, and that kicking the can down the road does nothing. Our kids are gonna cost money. A bit now on the front end, or a crap ton on the other end. If they can’t look at the human factor, the right to qualify of life, so be it. But the numbers speak.

THIS! I have been saying this for years and nobody listens. Nobody cares. The bottom line is always about the bottom line and they just don’t get that they have to pay out ether in the beginning or the end when things get so much worse (and so much more costly). It saddens and infuriates me that nobody in government wants to even try to understand this.

Outstanding article. Beautifully articulated. A new book called “Far from the Tree: Parents, Children and the Search for Identity” by Andrew Solomon addresses some of the same urgent concerns.
I wish your article would be read by all politicians at all government levels, especially the ones tring to find an adequete response to the mmurders at Sandy Hook.
But as a friend of mine once said when I wondered why a good plan was not being followed by the state government, “The answer is money, Stephanie, the answer is always money.”
Thank you for a pure, painful, honest view from the mental health trenches!

“Just because you cut a social program doesn’t mean you’ve erased the problem the program was created to ease.” That is true of SO MANY THINGS. It just boggles my mind that it seems cheaper for us to skimp on children’s potential while we simultaneously pay for the costs of having lots of adults around whose potential has been stunted; it’s like we truly don’t get that children grow up and that all adults started as children.

Living in nyc and encountering so many homeless people who it is clear are mentally ill your words ring so true…none of us knows their backstory.their upbringings ans whether they even had access to any kind of medical care at all. This post should be mandatory reading for everyone. I am beyond awed by your courage
and conviction.

Living in nyc and encountering so thimany homeless people who it is clear are mentally ill your words ring so true. None of us know their backstory.their upbringing and whether they even had access to any medical care at all. This post should be mandatory reading for everyone. I am beyond awed by your courage and conviction

This is a great article and it does an excellent job of highlighting the legitimate stigma surrounding mental illness and the lack of qualified, available resources for those suffering with a disorder. I have several dear friends who face these challenges on a regular basis. It is not easy and this story does not exaggerate that truth; there are never enough resources and there are many legal loopholes that prevent some children, and adults, from getting care.
However, it is unfortunate that this article chooses to blame “republicans” for being uncaring or insensitive in terms of the validity and need for social programs. I don’t know a single “republican” who thinks that necessary social programs are the problem. The problem is most often the ineffective management, or lack thereof, of these programs. Often, the actual recipients are NOT those for whom the programs were intended to help in the first place; those who need it the most. Instead, families and children with real need are faced with caps and limiters that prevent any hope of long-term assistance, assuming they get approved for any assistance at all. Those who choose to rely on state services when they DO have other choices essentially ensures that the needy get nothing. Yes, Virginia; there are people who lie and cheat the system.
And, the simple truth is, there doesn’t have to be a social program for everything! Rather than force a person to take responsibility for their own actions and personal lack of judgment, we have made a world of excuses for every ignorant act that someone stumbles into in their lives. Yes, I understand that unfair and cruel, even horrific, things happen to people, and the resulting suffering is real. But, EVERYTHING is not a tragedy. Mental illness, that is a tragedy but it is lost in the sea of so many others that it does not get the attention it deserves.
Society is so busy running around funding programs for every sob story (to make ourselves “feel better”) that we have become distracted from what is really important socially and morally. How can we effectively care for those who truly need our help when every person who ever made a mistake in their life must have had some “reason” for it and so it becomes society’s problem, nee the government’s problem, to take care of it. Instead, the funding for social programs that were created to help those in real need is divided or cut, and sometimes squandered, because a myriad of other feel-good programs also need funding and there is not enough money to go around. Again, the result is those who truly need community help and support can’t get it.
Unless, as the author pointed out, the mentally ill wind up in jail because some “republican” didn’t care enough to fund this person’s care when they were young. Yes, that must be it. Republicans are more interested in keeping the homeless from hanging out in front of restaurants than we are for the well-being of our neighbors. Wow.
It is this kind of misplaced finger-pointing that distracts from the heart of these types of political issues and prevents us from working together to find real solutions. Some republican probably did vote against some bill that prevented funding for a program and I am quite sure that a democrat never did a thing like that. Surely it must be true then that democrats are more than happy to keep throwing money at a problem and hoping it will somehow fix itself as opposed to making the tough choices for true reform.
Why not work together to resolve these issues? Because there is less focus on what the government is REALLY doing with our money when we are fighting amongst ourselves and blaming each other. And THAT is the way the government (republicans and democrats) want it.

Thank you for writing this…..you are so correct. I have a child with PANDAS. He was incorrectly diagnosed for years with ADHD, OCD, ODD, Tourette’s, Asperger’s and anxiety. Since we have treated the PANDAS, all of the other diagnoses have been lifted (except for mild ADD.) I could write volumes, but please rule out PANDAS/PANS in your children with mental health diagnoses. It has saved his life and our family. Hugs to all of you……

My older daughter, Loren, sent your post to me through Facebook. I hope and pray it get sent all over and back–your Truth and countless other Mothers’ Truth of special needs children and young adults need to be HEARD!

I can’t tell you how your Truth has been my Truth for since 1970 or really before in watching my Mother having to endure no real help for my brother who had ADHD.

Also, back in the 70’s, if you had an IQ below 69; the child could not possibly have any counseling needs and/or a co-occurring DSMR diagnosis. In fact, in 2013; I just heard “..in FL …it’s not possible to have someone get counseling through Medicaid..if IQ is below 69?” So…forty some years later and counting….things have not changed. I am now dealing with another generation (grandchild who has Autism/ID and is being warehoused because it’s easier to “believe” her Label; than figure out how to teach her!) and the story is the same….

As well, I can’t tell you how much medication that my grandson was placed on while he was so young; and these meds were not even approved for his age group or for his “diagnosis”. What effects will this have on him later; now?

Medication was also an issue with his Mother when she was young and had behavioral problems…they threatened me that she needed to be placed in an ED class. Thank God we had ONE teacher who said, “…don’t let them put her into that ED class…she knows why…ED kids don’t. That comes from the “least restrictive” environment of the School system’s choice. EMR Class or whatever name they gave it back then;…you know the old saying “…Monkey See; Monkey Do”…that what’s we had to deal with.

We didn’t find out until years later that her seizure med, Mysoline, was causing this behavioral problem!! Also, just how many of these children or young adults, etc. were on psych meds…too much documentation that these horrific incidents have taken place while those responsible have been on the psych meds!

I’ve always said, “…if you don’t pay on the front end..you end of paying big time on the back end.” I guess the living parent(s) of the teen murderers I’ve just read about online today would say something to that effect as well.

Interesting to see the comments regarding the murdered mother “…didn’t she know…why didn’t she do anything…somebody must have known… YOU BET THEY KNEW!! Broken educational systems; broken mental health systems leave all of us susceptible to being murdered in our sleep or otherwise from either our own family or those children or young adults of other berated and shamed parents.

Interestingly enough, I asked a Director of a large and prominent County Educational Resource Center (she had just come from a private school (very expensive) why was her former employer able to teach those with dyslexia successfully? I asked her to please ask your boss why is it that this school system can’t teach these children; and your former school could? I guess she choose not to ask her boss and answered me by saying, “… the law says a FREE and APPROPRIATE education, …not a quality education!”

So well said***************

Why are our school systems sending our children with behavioral problems to very expensive private schools; they can’t teach them and bring about behavioral changes? It really didn’t seem that difficult to do; but I know how costly it was for our school system!!

What was learned from Virginia Tech massacre? What will be learned from the recent one in Connecticut? Trust me…nothing…that they (mostly, the parents of those children that have these problems don’t know already!)

PARENTS: You better get the help that you can before they turn 18 because after that “forget it”. Maybe a class action law suit?

We are such a wonderful society that we have given these unfortunate people so many freedoms…the freedom to be homeless; the freedom to be hungry; the freedom to use a jail or prison as a substitute for an Psych Institution; the freedom to choose to be medicated or not; thus, the freedom to often choose to kill others!

In fact, I asked a State of Virginia Social Services employee how can you not look out for these people–elderly; the disabled; and she said, “people have the right to make bad decisions for themselves!” Oh, how we love the GRAY!! This is why we have to wait– to become reactionary with a crisis instead of being proactive and deal with systems that actually work for our families.

Lots of money has been spent on research that speaks to the lack of support for families that have special needs family members; just read an article that speaks to Mothers of these children to have their own difficulties and they called it PTSD! I know I’m not the only one fighting and dodging bullets of the defunct Mental Health, Social Services, Court System, etc….

Don’t dare judge me…until you walk in my moccasins! It’s the Mothers that will make the changes that are needed by speaking out; by saying, “I’m mad as Hell…and I am not going to take it anymore!”

By seriously suing the Educational system for an inappropriate education; by considering suit as well as complaints to the various Mental Health Boards for those who think they know best…and mostly blame the parents or make up fraudulent diagnoses in order to get paid by “the systems”.

And by the way; please watch your children; don’t expect the Juvenile Court System to not be dysfunctional as well!!! There are NO REAL ADVOCATES for your children in the SYSTEM:

This is why Parents need to Advocate strongly for a Children and Family Ombudsman Program in each of their States; such as the State of Massachusetts has!! Once you’re snared in the system; there is NO ONE THERE to help or advocate for you or your child–it certainly is not the Juvenile Courts with is “prosecutorial” GALS and their CASA dysfunctional workers or their buddy case managers in Social Services!!! Ask me how I know; it’s another book I just don’t have time to write!!

Keep Speaking your Truth, Adrienne; Carter is so fortunate to have you.. (love his picture); we do need faces to go with our stories!!.Do it before he turns 18 or make sure you have guardianship beforehand! I didn’t and now I can’t help my daughter at all.

So sad; but that is how the system is designed…for people to have jobs…to have grant projects come up; (BILLIONS going to COLLEGES) run their course only to have another one pop up; then having to be written, having to be trained (expensively) etc.only to start anew in about 10 years; BUT; everybody got a job; but our families still don’t have the help and support that they desperately need.

You and I all know; it is a lot of work-apparently too much for government employees to deal with adults who are not altogether and actually NEED help! And because they have these disorders they don’t know or believe they have them…and there is technical/medical name for this (as it affects the temporal lobe)!! But somehow the “professionals” in the field either don’t know or pretend they don’t know this!

Year after year, vicious cycles continue which leave families burned out, living with more dysfunction than ever…and on top of all of this enduring hopelessness for so many years…you also have to deal with the snide and arrogant comments from the so-called professionals (educational, mental health, etc.)

At 66, I call it like I see them–what we have is “everybody got a job”; not quality work; no accountability” …Merry-Go-Rounds Referral systems to Nowhere funded by our U.S. Government Golden Goose (you know the inflated balloon that’s set to blow up soon) in the form of Grants….and NO accountability.

The finger is always pointed to someone else! It’s the Congress; its the State legislators; always…it’s those people who set it up so they can’t help or they can’t do their jobs the way they should be! Those in the system knows what the problems are; but they are too busy doing CYA and keeping their mouths shut because they want to keep their 9-5/40 hr a week jobs!

Start Standing up and be Counted; get on those “grant provided” non-profits Boards or those within our “systems” that are supposed to be advocating for our children/grandchildren; make them put accountability and quality built in…with financial penalties?

Hopeless: maybe? If they let the blatant fraudulent thieves off at Wall Street; do you really think they care about our children and our families?

There is a leader among us; a new leader(s) to take on the self serving…I see an American Spring coming; don’t you? How much more arrogance can we tolerate?

My BLESSINGS and Heartfelt Appreciation to all Families of Special Needs children and young adults…especially the Mothers!

that was the most truthful article i have seen on the state of mental health care for our kids with severe mental illness. it is truley pathetic what little is available to support them or us their parents. my 13 year old has dx bipolar nos with a side of anxiety disorder, adhd, rad. he can be assaultive when dysregulated. i am terrified for his future and have been trying to navigate this crazy system since he was 4 years old. schools dont get it, psych hospitals are overwhelmed, residential facilities around here are total toilet bowls. we have been lucky over the years to have stumbled across a couple of great psychiatrists that have really hung in with my son and made positive changes with his meds – the calm never lasts for long though and before we know it we are right back at crisis point and looking for help and you know what? there is not help. i live on long island , in ny. the “catchment area” for psychiatric emergencies is a large governmently funded hospital where all psychiatric emergencies – yup all – like kids and adults and police escorted and from the local prison next door to the hospital – all are held in the same area until they can be seen by a psychiatrist – can sometimes take many many hours – before they are even considered for an inpatient bed either in this hospital or in one of only 3 others in the area . it is insane. truley. i have talked to the office of mental health people on many many occasions here in ny. they really dont have any answers … they have too few inpt beds, too few residential beds, not enough waiver services, no real answers. i took my son home again from a long hospital stay 3 months ago. he really wasnt much more stable than he was going in but i simply could not stand it anymore – him a drooling mess from way to many prn meds, me running back and forth, trying to find the right school for him ( this will be his 7th school…) then the hurricane – i just couldnt have him there anymore – he is receiving home instruction 2 hrs per day and a medicaid waiver provides 9 hours of in home respite per week ( no one feels safe taking him out of the house at this time). there is no school program for him. i have no real plan. he is calm and in control most of the time. he is better with me than anywhere else. thats all well and good right now but – his future… thinking about it terrifies me as i said. trying to take it a day at a time. thanks again for speaking truth about this horrifying situation. if you think of anything we can collectively do to improve things please count me in. i wrote to the medicaid people and the state legislators about allowing a consumer directed personal care aide program for kids with severe mental illness. i think it would help us at home as i know my kiddo requires 24/7 supervision that completely exhausts me after awhile – which sends me into a need for a respite because his behaviors just can overwhelm me when im exhausted. no one wrote back so i guess they dont like the idea… anne in ny

Such a profound post! You hit the nail on the head. Just last week our school psychologist was informing me that my child will need to be 2 years behind before they can help him in school. Then in the same week I was told it would take 8 months to 1 year to see the recommended Neuropsychologist needed for my son’s assessments that would lead to his treatment. As parents, we are left to figure this out on our own. It is overwhelming and so discouraging. Thank you for giving us a voice!Mama Bear recently posted..A Boy and His Cape

Good Mamma, following those instincts! My oldest was finally pulled and homeschooled at 14, about five years after my gut told me to get my head out of my a$$. It turned out to be the best decision ever.
Having a child with MI is the toughest battle ever and those who haven’t lived it should be thankful. They also should open their eyes, ears & hearts and learn. Sooner or later it affects someone you know and love.JuJu recently posted..Dude, Where’s My Sanity?

I am sorry that I will not get a job because of a young person who has never been sick or ill. I will die because of this I hope this matters somewhere There are people who care and they will be sure that my voice ie heard. Only when we die will others deal with injustices

This is thought provoking and true and real and could be applied not just to your child’s position but every person with a mental illness that is severe… But of course especially children. If I weren’t mentally ill myself. This would make me want to stop my degree and switch my major to psychiatry with an eemphasis on adolescents. .

agree fully… my aunt had some surgery years ago and it did something to her mind. over the past 10 years she now hears and sees things that aren’t there, talks about clones or body doubles etc. has some mental illness.

her mom was taking care of her, at least trying too. BUT now her mom just died and she called us saying i think the clone died etc. we called the mental health clinic and they can’t or won’t do much. so now it looks like she will be roaming the streets soon since the USA doesn’t do anything or have any longterm plan for mental illness.

This is exactly my fear. My 8 year-old son has bipolar and Asperger’s. SSI supports all his funding with through the state. It has been a fight to make sure he gets the best care. It is important to know that these kids needs are important and must be met. It is neglect if parents do nothing. In my opinion, it would be the same if you didn’t feed your child enough food to be healthy but instead just stuff them with enough garbage to get by. I haven’t worked in 2 years because my son’s needs were so great, but he is the most important.
I commend you for speaking out about their health care. No one realizes how hard it is, how much sacrifice it takes. But we knew our lives were over when we had kids (lol). Our lives were no longer ours. It’s time to commit to that.

Please send me a email I.am watching you on the ricki lake show and have a 7 yr old with bi polar.disorder everything you are saying rings true to me and to my heart i’d love to chat hope to hear from you soon. Laura

This posting, “You Are Going to Pay for Our Kids | No Points For Style” ended up being
terrific. I am impressing out a copy to show my buddys.
Regards,Mariahttp://yahoo.com recently posted..http://yahoo.com

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Wow. I stumbled upon this via FB. I just received my certification inSPED and I really appreciate your pay it forward theory. I would like to share this with people who feel the sped kids are taking resources from their ‘gifted’ kids. I also struggle with the appropriate aspect of inclusion. Anyway, thanks for putting your thoughts into words and I would love to receive new postings.

I wish you lived near me, (I live in Virginia Beach, VA). I’m a graduate of Cayce/Reilley School of massage, I haven’t bothered to take the certification exam because I’m continuing my education till I feel entitled to advertise only to work on disabled children and their sooooo stressed parents. I’m a bit the spartan myself, I just can’t get into the idea of rubbing an business exec down with something cherry scented. But I would so love to pull the stress of of you & maybe some pull some of your child’s pain out of him.